How to make the decision for another Mitral Valve repair/replacement?

[offwego]

As I have had my Mitral valve repaired 5 years ago only to have increased leaking over the last few months, along with symptoms of difficult taking deep breaths, increased sensitivity to heat, etc, I am now pretty certain another surgery is in my future.

The surprising thing I learned is how much of this decision is up to me! Dr. Galloway of NYU, when pressed gave the odds (this is without the benefit of a TEE which is scheduled for October or November), he gave the odds of another surgery being needed in 5-7 years as 50-50.

I added 25mg of Toprol to 80 mg of Diovan to help with symptoms and while they have certainly helped, of course I would prefer not needing them and not having the symptoms at all

I am 50 years old, healthy (with MS that is not much of an issue with medication I might add) have lots of interests and can use all the energy I can get.

I was able to do 10 minutes on the stress test last week but I do not like the way I feel.

I am leaning towards getting another surgery to repair or replace the valve possibly in January, of course waiting for the TEE and speaking more to Dr Galloway and getting at least another opinion.

But listening carefully to my body, and seeing worse ad worse echo results from November till now, I just know I am going to need another surgury, unless I accept the symptoms of a leaking valve, which I prefer not to.

Dr Galloway said the tissue valves (if he cannot repair) last at least 20 years and were not as good even 5 years ago when I had the first surgery. As I am 50 years old, obviously I would not want yet another OHS if it can be avoided.

I suppose I can live with the symptoms I have and be monitored every 3 months with Echo tests and wait it out a bit for perhaps an even better tissue valve to be introduced. I cannot count on any certainty of another repair being possible.

Surprisingly I am doing as well as I could with the news that my heart is not working correctly and it's not my imagination. My cardiologist was not taking my complaints all that seriously. I have now learned to only see doctors in NYC with much more experience. If I had I would have suffered less with symptoms for sure and I would have had that much more time to prepare. I had the exact experience when first diagnosed with MS two years ago by a NJ doctor who gave me terrible advice and information on treatments. Only when seeing a top renowned MS specialist did I start a medication that has changed my life.

Any thoughts appreciated very much.

Hope you are all enjoying the long weekend!

 

[ALCapshaw2]

It's a Tough Decision to make.

First, get the results of your TEE which may add some clarification.

Then, if you are still interested in surgery, get a second opinion from a surgeon with lots of Mitral Valve Experience.

If you come from a family of 'Long Livers', you may want to consider going mechanical.

If you still want a Tissue Valve, you may want to consider medication to postpone surgery, adding a few years with your present valve, and inceasing (slightly) the longevity of a tissue valve replacement.

Lots to think over.

 

[Ross]

Holding your breath and waiting for something better could, in the end, cost your life. We tell people everyday to not plan on tomorrow technology today, but use todays.

I'm sensing you don't want mechanical because your afraid of Coumadin. We also tell everyone to educate themselves on Coumadin so that they can see that it isn't the big bad drug that even the medical profession still purports it to be. Another way to put a spin on this is, there are replacements for Coumadin on horizon. Conceivably within the next 10 years or less.

Please don't rule out a viable option based solely on fear of Coumadin.

Please read the stickies in the anticoag forum and visit Al Lodwicks site at www.warfarinfo.com and get a real understanding without a bunch of myths that your hearing right now.

 

[Jkm7]

I'm sorry you are in such a situation but wonder at your being given a choice.

I had Mitral Valve Replacement (Bovine) end of February and there was no 'choice' involved. I was not going to remain stable nor improve without surgery. It was clear my quality of life was going to continue to diminish.

Keep in mind there is a point of no return. A valve can get bad to the point of being too late for surgery.

Good you will have a TEE soon as that will give you much information.
Good luck and hope you'll let us know how you are doing.

 

[offwego]

Thanks for the good replies...Ross, I never mentioned a fear of Coumadin but of course would prefer not to take it. Unfortunately my father passed away from cancer related disease at 59, his father younger than that. My mother;s father died of cancer in his 50's. The women fare much better, living into their 80's and 90's on both sides.

Dr. Galloway felt the valve most likely is not going to suddenly get worse, of course that's pretty much an experienced guess at this point. WHen my Mitral Valve went last time it was 'sudden' only because I ignored going to the cardiologist for 5 full years after he told me I had a loud murmur and that it was MVP and usually does not require surgery..So while it appeared to be 'sudden', it probably wasn;t. I was def not given a 'choice' on that surgery other than a few weeks to decide when to do the surgery. The mental stress of that experience was far worse than this one.

I had a horrible reaction to the morphine and believe the OHS played a factor in my discovery that I had MS. It was so crazy trying to figure out what was going on.

I lean towards being aggressive in getting it repaired or replaced as, one, I want to feel as good as I can as soon as I can, two, to prevent any damage to my heart (although that probably won't happen as I will be getting it checked every 3 months I imagine and three, I am making major changes in my life, starting a business in the Carribean wtih my gf who is 10 years younger...Have to keep up with her in the heat!

 

[ALCapshaw2]

It sounds like a discussion with your Surgeon, PCP, and maybe even a Pain Specialist might be in order, so that you can find an alternative plan for post-op pain management. It's always best to "Be Prepared"!

'AL Capshaw'

 

[offwego]

It sounds like a discussion with your Surgeon, PCP, and maybe even a Pain Specialist might be in order, so that you can find an alternative plan for post-op pain management. It's always best to "Be Prepared"!

'AL Capshaw'

The reaction to the morphine was paranoid delusions that were pretty extreme..also I was not out completely during the surgery and vividly remember them having to resuscitate me..(3 times)...

I remember having great success with Vioxx for post operative pain...guess that's out now... Now I will just have to find something to reduce the great discomfort of chest hair regrowing and driving me crazy with itching! lol

 

[offwego]

Well here I am 3 years later and the choice is being made for me...I've been stupid and not followed up with cardiologist and have noticed my energy slowly decrease and my heat tolerance for some reason getting worse and worse..I hate hot humid weather and noticed sensitivity increasing.

I've moved to NYC about a year ago and during all the adjusting didn't see a doctor until this week.

I went back to NYU where I had the surgery 8 years ago, saw the same cardiologist (Dr. Cole). He did an EKG and said he is sending me right over to the lab for an echo. He also said he didn't even need to see the results as clearly I need surgery to fix or replace my mitral valve.

Yesterday he confirmed his suspicions and today I saw Dr. Galloway, Head of Thorasic Surgery at NYU. I met him 3 years ago and he deemed it to be 50-50 that I would need a reop in 5 7 years.

I am scheduled for surgery October 21st. He said he will not do a minimally invasive approach and the odds of a re repair were low but of course would do a repair if it were possible. We decided on a Tissue Valve (generation 3?).

I live within a half a mile from NYU and on one hand am happy to just have a decision made to get this done and of course at the same time dread the recovery...Particularly the depression that hit me like a ton of bricks last time...No one had prepared me for that...

Anyway, I'm sure to be posting a lot over the next few weeks.

Hello again everyone!

 

[rubywhistle]

The reaction to the morphine was paranoid delusions that were pretty extreme..also I was not out completely during the surgery and vividly remember them having to resuscitate me..(3 times)...

Wow, thats scarey!

 

[Gail in Ca]

It's good you have a plan. I'm wondering why he can't do minimally invasive? Before I got endocarditis that changed everything, Dr Miller said my valve would be repaired/replaced with minimally invasive surgery. Does that go out the window once you've had your valve worked on and it needs to be redone? I'm not liking that too much, as my repaired mitral seems to be leaking a bit more with each echo (2 1/2yrs).
I sure hope your redo goes really well. I know now that the mitral really affects how we feel, I think more so than the aortic, when it starts leaking mod to severe.

 

[offwego]

It's good you have a plan. I'm wondering why he can't do minimally invasive? Before I got endocarditis that changed everything, Dr Miller said my valve would be repaired/replaced with minimally invasive surgery. Does that go out the window once you've had your valve worked on and it needs to be redone? I'm not liking that too much, as my repaired mitral seems to be leaking a bit more with each echo (2 1/2yrs).
I sure hope your redo goes really well. I know now that the mitral really affects how we feel, I think more so than the aortic, when it starts leaking mod to severe.

Thank you for the well wishes....I do feel really tired and do almost nothing but watch tv and hang out...Could be worse for sure...

I wouldn't say it's impossible to have minimally invasive surgery a second time to repair or replace a valve but Dr. Galloway felt there was too much scar tissue to do it again.

I would not be surprised if another surgeon might do another minimal invasive surgery on me but I don't have the energy or inclination to see or think about it too much.

NYU is so close to my apartment. Dr. Galloway is a well known and respected heart surgeon who specializes in minimally invasive surgery and valve repair...

I guess if I were a woman I'd feel a bit differently maybe due to the scar but in some odd way I am fine with a 'tradition;" surgery...Dr. Galloway explained some other advantages to surgery this way...and if a repair is possible, I know he will do it.

I really like NYU and the service I am getting now...It's fast, no voicemail and a breath of fresh air..

 

[offwego]

It's funny to realize this thread was made 3 years ago, almost to the day...It should be titled...How NOT to make a decision...LOL.

I hate to admit this publicly but maybe it will help someone to be so honest. But I think a part of me 'short circuited' about 2 years ago when I met with a surgeon to get an opinion on a second repair. In fact a member here was very helpful and encouraged me to get the surgery...But I guess I wasn't ready..

I did the stupidest thing and ignored it...I didn't go to the cardiologist for a least a year...maybe 1 1/2 years and i supposed I would have normally gone every 3 months...Even though that was a bad decision...frankly going again and again and again and looking at the same sourpuss face of the technician each time and then the same conversation about waiting and probably the slow worsening test results...

I hate to say this but this is the way it had to happen...I adapted my life particularly the last 6 months ( my guess is that was probably a turning point in the valve performance...)...I got a terrible sore throat and cold in March and the recovery was stupid long..Just as the recovery from Broncitis the last 6 weeks was ridiculous..I am certain my mal functioning valve had a lot to do with such a slow recovery and feeling worse than ever.

The truth is that I've been living the last 6 weeks as through I am recovering from heart surgery...in fact I am doing even less...

SO imagining 6 more weeks into the future isn't that hard..or 8 or 10 or 12 weeks...and I am very hopeful my then I am feeling much better than I am now...and at least each day forward is getting me that much closer to a full recovery.

I hope I am not being too optimistic...but I really expect this to go well and to feel much better....Oh no I am jinxing myself...knock wood, spit...haha

That's my 344am rant..

Good night all..

 

[Lynlw]

You know its funny you mentioned how old this thread is and what happened. I actually was a little surprised when you possted the other day about your going to have surgery soon, since I always thought you had it already and like so many people got busy enjoying life after surgery and dont stop here often.

You're in my thoughts that in a couple months you will be feeling much beter than you have in years

 

[escargome]

Well offwego, the past is the past. Sometimes it is difficult to wrap our brains around and agree to OHS even minimally invasive. Getting our hearts worked on in any form is a big step. But all that aside, you have taken your leap of faith and things will get better. Just keep your minds eye on how much better life will be for you once you get your valve fixed. Make sure everyone understands about your morphine reaction and that you may need some assistance with depression. Speak out and advocate for yourself. And you can always come on here and cry, rant, laugh, or just plain chat. Remember we are open 24/7. It's five o'clock somewhere all the time and we likely have a VR member that is online. Sending you positive thoughts and hugs and I will keep in in mind on the 21st.

 

[offwego]

That's about all I am doing these days...thinking of how much better I'll feel, how much more I will be able to do. I laugh at the 'nice' sounding 'minimally invasive''....it's a nice idea and it certainly sounds much better than a description of traditional surgery but I don't think it's all that much different, if at all really.

I had a lot of pain for a very very long time as the 'minimally invasive' scar was healing...I'm talking years of sensitivity, particularly when wearing seat belts..

I would not want minimally invasive right now, I guess I'd do it but there is a part of me that wonders if the surgery had been done traditionally, if it would have turned out better...

I'll never know of course...and it doesn't matter now..

I just want to read about the differences in how much better I will feel...I can't imagine feeling normal again...it's like this is the new normal...

Thanks for the offers of support, it means a lot...I know you can all take it if I rant and moan and groan...

My biggest fear is being out of control and on medication and emotionally losing it on those close to me...It sucks but of course that's life...tick tock...getting closer....yikes!

 

[normofthenorth]

Offwego, I think there's a lot of positives to see here. Your denial-avoidance may not have even changed the date of your surgery, who knows? Either way, that's "bygones" and you'll get fixed soon. Either sternotomy/OHS or minimally invasive can be relatively painless and quick or a long nuisance with lots of bumps in the road. I'm ~10.5 months after a relatively painless and quick sternotomy/OHS, and I think I felt better than you describe fairly soon after the surgery. With luck, you will, too.

Another (weird) positive is that you are symptomatic now, which will shorten the time until you feel better. I felt more-or-less perfect up to ~8 weeks pre-op, so when people asked me post-op "How do you feel?", I had to scratch my head and think too long.

I disliked the reaction I had to the one shot of Morphine I agreed to post-op (though it was much less disturbing than paranoid delusions), and I turned down all the rest. Fortunately, I had remarkably little pain, so there was no heroism involved. We're all pulling for you to be able to do the same. Do have a good heart-to-heart with your anesthesiologist(s) in advance, if you can.

 

[offwego]

Offwego, I think there's a lot of positives to see here. Your denial-avoidance may not have even changed the date of your surgery, who knows? Either way, that's "bygones" and you'll get fixed soon. Either sternotomy/OHS or minimally invasive can be relatively painless and quick or a long nuisance with lots of bumps in the road. I'm ~10.5 months after a relatively painless and quick sternotomy/OHS, and I think I felt better than you describe fairly soon after the surgery. With luck, you will, too.

Another (weird) positive is that you are symptomatic now, which will shorten the time until you feel better. I felt more-or-less perfect up to ~8 weeks pre-op, so when people asked me post-op "How do you feel?", I had to scratch my head and think too long.

I disliked the reaction I had to the one shot of Morphine I agreed to post-op (though it was much less disturbing than paranoid delusions), and I turned down all the rest. Fortunately, I had remarkably little pain, so there was no heroism involved. We're all pulling for you to be able to do the same. Do have a good heart-to-heart with your anesthesiologist(s) in advance, if you can.

Great post. thank you for making it. Great points I hadn't considered...You are 100% right on a few counts...actually if I had to put a finger on when my valve worsened it was probably around 6 months ago...I guess I wish I had it done 3 years ago but that is water under the bridge and pointless...The truth is I just couldn't bring myself to do it...Now I can...I also made this happen very fast...I was given a two week time frame just to see the surgeon but got in, in two days!

I have spoken at length about morphine to the nurse practitioner who took copious and careful notes about my reactions and even spoke about it as though it's PTSD reaction, which in fact it probably is.. The reaction and the story is even worse, longer and crazier than I posted here..The whole experience was absolutely insane and no one I've spoken to has EVER heard a wilder reaction to morphine...Figures it would be me..I have a strong mind, always thinking on my feet, very fast reactions and reflexes and I;m just a little bit intense..

Don't give that man morphine please!

I do have a positive attitude, of course I get anxious if I think of the specifics I am facing but when I do, I really try to shut it out of my brain...

I am worried about anxiety hitting me on Thursday when I get there for the cath test...I did not feel well at all and almost passed out at pre surgical testing.

I pulled myself together but it was rough there for awhile...Amazingly they took my blood pressure and they have these automatic machines and I 'm certain they are far off...That actually added to anxiety...BP was like 95/60...it's NEVER that low...never ever...and that triggered me off in a bad way believe it or not as they took it when i felt faint...I took it at home and it was normal of course...the whole pre surgical testing was laborious going over the same questions and I was happy to get out of there!

I know it will all be fine..it's the final letting go that's just a tad difficult...

I think we all can relate!

ugh...lol